Assistive Technology

Over the past year, I have thanked the Lord countless times for the equipment Early Intervention has given Wesley and the therapy tools his therapists have graciously loaned us. Where would we be today without his SPIO vest, orthotics, wrist and ankle weights, weighted vest, brushes, Rifton high chair, shopping cart with weighted groceries, exercise ball, wooden cube chair and table, and the countless other toys his therapists have loaned us?  God has used these things to work in a mighty way in our little boy's life.  We have seen so many changes in his behavior, attention span, and ability to communicate and interact with the world as this equipment has been introduced into his life.

You can only imagine my excitement when we finally received Wesley's assistive technology equipment last month.  He received a touch screen for our computer, touch screen software that is developmentally appropriate for him, Boardmaker Plus software (which I use to make communication picture cards for him), and a picture board on which to attach the picture cards.

Over the past six months, therapy has grown more and more difficult as he has expressed his dislike of certain activities by screaming, throwing himself on the floor, and hitting me.  We have been working on first/then concepts with him verbally, but he struggled to make the connection.  Since receiving the new software, it seems that part of our problem was that we have a visual learner on our hands.  The new picture cards have revolutionized therapy in our home.  I am now able to select a non-preferred activity to be followed by a preferred activity and explain to Wesley with picture cards what we will be doing.  He is so much more willing to cooperate with non-preferred activities when he knows that a preferred activity is coming next.  He even runs over and sits in his special therapy spot in front of the couch to wait for the activities as we get them ready.  He pulls the picture cards we present to him off of his chart and carefully examines them to see exactly what they are before putting them back and beginning his activities.

Since starting to use the picture cards, we have seen Wesley's number of preferred activities increase as he has willingly tried activities (such as stacking blocks and reading books) enough times to find that they actually are fun!  His attention span also seems to be increasing, as he is willing to participate in an activity for longer, knowing that when it is done he will get to do something he likes.

This has also helped us as we work on verbal communication with Wesley.  It seems that knowing his hard work will soon be over helps him to press through and try to to talk.  Our poor boy still has such a hard time with motor planning.  To say the "m" sound, he first presses his lips together.  Then he puts his hands over his mouth to feel his lips and make sure they are really closed.  Sometimes these steps occur several times before he is able to verbalize an "m". But since helping Wesley to understand the structure of therapy, his "m" has started to come sooner and he has also added the "g" sound to his vocabulary.  Last week for the first time, he started saying "go!"  Now, whenever we say "Ready, Set....", he yells out an enthusiastic "Go!" Sometimes his "go" sounds more like "do" or even "in", but he's trying and we are so very proud of him.

Helping Wesley to understand the structure of therapy and the other routines in his life has helped him tremendously, which has also given this tired mama the continued strength to persevere in our therapy routine and trust that God is working through it to help our precious boy.

Sorrowful Yet Rejoicing

Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands.  Psalm 138:7-8

Somehow today sneaked up on me like a burglar in the night, ready to steal my joy and leave sorrow in it's place.  In the past, I have actively prepared my heart for days like today and asked my friends to pray for me throughout the day.  Today was different.  The busyness of life overtook me, not allowing me even a moment to think about what was to come.  But despite my unpreparedness, God was faithful to walk beside me as I faced my day and fill me with His peace that surpassed all understanding.  Despite the difficulties of today, God gave me the grace to see that all those involved care deeply for me and my son and want the very best for him.  More importantly, God was kind to remind me of His steadfast love for Wesley and His perfect plan for Wesley's life.

Today was Wesley's annual IFSP meeting with Early Intervention.  As a mother, this is the day when I am faced with how vast my son's delays seem when they are written out on paper.  I cannot even begin to express how heart breaking it is to read evaluation after evaluation and see numbers like 50% delay alongside age equivalent calculations.  The areas in need of growth seem eternally long in comparison to the lists of accomplishments and successes.  And then it hits me again that this is my boy, my baby, my most precious child, who is being discussed and written about.

Oh how I long for the day when Wesley will meet His Savior face to face, and the evaluation of him in God's book will be - "Created in My image, saved by My Son, loved forever, given a new and perfect body with which to worship Me forever in fullness of joy".

As I wait for that day, I am grateful to be reminded of Philippians 4:8, which says "Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things."

So today I will fight to believe what is true and lovely.  God has blessed us with a wonderful son, and Wesley will meet all the milestones that God has ordained for him in God's perfect timing for his life.  God will fulfill His purpose for Wesley.  He will not forsake Wesley, the precious work of His hands.

Last Year's Photo Book - Finally!

Every year it gets harder and harder to find the time to make our annual photo album. This year only an offer for a free Shutterfly photo book if I finished by the end of June was enough of a push to help me finally complete last year's photo album! I can only imagine what a hopeless endeavor this year's photo book will be if I wait to start until next January.

Update: For those of you reading this post via RSS or email, you will need to click on my blog to view the photo book.

Big Brothers

All Must Mean All

"All the paths of the Lord are loving and faithful." Psalm 25:10

All does not mean "all - except the paths I am walking in now," or "nearly all - except this especially difficult and painful path."  All must mean all.

So, your path with its unexplained sorrow or turmoil, and mine with its sharp flints and briers - and both our paths, with their unexplained perplexity, their sheer mystery - they are His paths, on which He will show Himself loving and faithful. Nothing else; nothing less.

Amy Carmichael, You Are My Hiding Place, p. 98

McDonald's

Most parents would prefer that their children not eat at McDonald's (or any other fast food restaurant, for that matter).  I, on the other hand, cannot begin to tell you how OVERJOYED I was that Wesley actually ate lunch with us at McDonald's on Monday.  Due to a confluence of events, we left our house early that morning and didn't get home until nap time.  As I had not been expecting to do this, I did not plan ahead like I usually do and pack a lunch for Wesley that he would both be willing and able to eat.

As we pulled into the McDonald's parking lot for lunch, Zach and I took a minute to pray for God's mercy, that He would help Wesley to accept the food I offered him and not fight me with every bite.  Then we went in, with me thinking that if Wesley ate one or two bites of chicken nugget and one or two fries, I would count our lunch trip as a success.

Much to my surprise, Wesley INHALED his lunch!  The most amazing part of lunch was that Wesley accepted his food immediately when I offered it to him, whereas normally the first bite or two of something new is a huge fight.  And not only did he accept it, he WANTED it.  He dove for each bite of chicken nugget as I offered it to him, and he stuffed the fries into his mouth like they were candy (or in his case, goldfish, since he dislikes all things sweet).  I am sure Wesley would have eaten more, but I only offered him two chicken nuggets, as they took a lot of work for him to chew, and Zach and I were long done with our lunches by the time Wesley finished his.

As we left the restaurant, I walked out in amazement at God's provision for our family.  He could have let Wesley do his usual fighting, and he wouldn't have starved.  Wesley would have been hungry, but he would have been fine.  Instead, God chose to answer our prayers in a powerful and marvelous way.  He reminded me that nothing is too small to bring to His throne of grace.  He loves Wesley, and He cares for every tiny detail of Wesley's life.

Phoebe Has A Family!!!

 

Yes, it's true!  I have been crying tears of joy all morning.  Yesterday afternoon I went to the Reece's Rainbow website to look at Phoebe's sweet picture, and much to my surprise, I found a bio of the family who has committed to adopting her.

I cannot stop rejoicing in the Lord's kindness to Phoebe.  He has given her a family!

Just look at these lovely pictures of sweet Phoebe.  Soon this precious little girl will have a mommy and daddy to hold her and love her!  Please continue to pray for Phoebe and her new family, as they walk through the long process of adopting her.

It's Raining Again

After a very short season of no medical issues, it seems that possible issues which need to be checked out are adding up again.  Wesley visited a pediatric dentist a few weeks ago, where my concerns about his mouth were confirmed.  He inherited large teeth and a small mouth from his mother, and his case, his upper jaw is so small that there is no room for his remaining baby teeth to come in.  As kindly as he could, the dentist explained to me that the best case scenario would be for Wesley's cuspids to force their way down in whatever fashion they can manage.  If they are not able to make their way down in the next six months, we will need to have Wesley sedated so that X-rays can be taken to determine next steps.  From there, as long as his teeth are actually there, we are looking at oral surgery to pull his cuspids down so that his upper jaw continues to grow and make room (whatever room there will be) for his permanent teeth.  Right now, with everything else going on in our family, this news seems minor.  But we are well aware of how quickly it could turn into a big deal if these teeth do not come in on their own.  Please join us in praying that God would lay His hand on Wesley's mouth and guide these teeth down on their own without surgical intervention.

In addition to his teeth, we recently found out that there are also possible concerns with Wesley's heart.  During his EEG last month, Wesley's heart rate was dropping significantly during the night, to the point that it was setting off alarms.  Currently none of his doctors have any idea why this might be happening, so we are taking Wesley to see a pediatric cardiologist and praying that he would be able to quickly identify the issue.  Our hope is that this would not be a serious problem.  As well, we just learned that Wesley has a heart murmur. We know nothing more than this, but it leaves us wondering why we were not informed of this sooner and concerned that there might be more going on with Wesley's little heart that we are unaware of.

It is discouraging to realize that we may need to drag Wesley through more procedures and surgeries.  Our poor boy has been through so much already, and the thought of putting him through more tests makes my heart ache.

In the midst of all of this, though, we rejoice that Wesley's life is being upheld by the Lord.  As I read through Hebrews 1:1-4 today, I was again filled with awe that Jesus, Wesley's Savior and advocate before the throne of grace, is the same Jesus who created the world, is the very radiance and glory of God, and upholds the universe solely by the word of His power.  Jesus upholds all things - including Wesley's life - just by His powerful word.  What a comfort this is to me, as I am again freshly aware of how there is nothing that I can do to give my son life and health.  Instead of fearing what may be in store, I can rest in peace, for my trust is in Jesus, who loves Wesley so much that He gave His life for him.